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Wednesday, November 28, 2012

First Shelbie. She is being tested for some thyroid problems and Epstein Barr virus. Not really a thyroid problem but a problem with the dosing of her thyroid medication. Her thyroid was destroyed 15 years ago by her immune system. We have not heard back on those results yet.

It looks like she is headed back to ITP land. So frustrating! She had another drop in her platelets yesterday. We are hoping that the IVIG buys us some time. I just know it's only a matter of time before we have to do chemotherapy again. Shelbie's dysautonomia is out of control too and causing some of the weird fluctuations in temperature. Every time her platelets crash, it is preceded by these exact symptoms she has been having over the past few weeks. They ruled out anything scary like lymphoma and leukemia so that is great! Relieved but bugged at the same time.

Samuel had his appointment this afternoon with the Ophthalmologist. He was a lot more scared than he has been letting on. I had to calm him down before we could even get out of the car. He was scared that he had a brain tumor. He doesn't and he won't be needing a glass eye! Whew! He does however have Ocular Migraines. For some unknown reason, the arteries in his brain, leading to his eyes constrict the flow of blood and when that happens, he loses his vision. There is no pain associated with it and there is no warning that we have noticed, when it is going to happen. It is a neurological problem, not an eye problem from what I understand. This just fits right in with his mitochondrial problems and common among kids with mito disease. The doctor emphasized how important it is for Sam to try to find triggers or signs when it starts happening. It can be really serious if he is doing something like driving, obviously.

During the exam, the doctor had to use several different drugs to look at different nerves, arteries and of course the retina. In order to do all this, he had to numb his eyes and dilate them. It's been since 2pm this afternoon when they did all that and his pupils are still gigantic! I don't think that is normal but there is nothing I can do about it tonight. His vision is blurry and of course the light bothers him but he insisted on going to his gymnastics class. I hope does okay.

I know that the only way to get through all this is to be flexible. We have to roll with it but honestly, I have been kind of digging in my heels lately. I don't want to have to be flexible. I hate this. It's pretty sad when a bone marrow failure syndrome like Shwachman Diamond Syndrome sounds better than mitochondrial disease. With mito, we just never know what is going to fail next and we are always caught off guard. It's not fun just in case you were wondering. So, we will move on with a new kind of normal accepting the fact that sometimes, Sam will be blind and sometimes, he won't be. Sometimes, Shelbie's autonomic nervous system will function and sometimes it won't. Sometimes, Spencer will be up all night and all day, day after day with chronic nausea and overwhelming fatigue and sometimes, he won't be.

Tuesday, November 27, 2012

by the word Crazy and the letters U-G-H! Today we are headed to the Oncologist to figure out what in the world is going on with Shelbie. I am afraid the ITP is back or on its way back and that makes me feel crazy!

Sam surprised me yesterday with the announcement that he lost his vision in his left eye for all of his morning classes! Good grief. The poor kid didn't call or anything, just sat there wondering to himself if he was going blind for good. I don't know how he remained so calm and just carried on like nothing unusual was going on! I would have been freaking out!

Last night I talked to him a little more about it and I was again surprised by his goodness. I think it would be easy for him or any of my kids to be bitter and angry but they aren't. They are truly amazing but still, I bet you any money, you don't have conversations like this in your family! Keep in mind, this took place while I was cutting his hair in the kitchen...
Sam: "Mom, am I going blind?"
Me: "No. Just because you lose your vision every now and then doesn't mean you are going blind. It's just some weird thing."
Sam: "Well, if you had to guess, do you think I have brain cancer; like a tumor growing in my brain and pressing on my eye?"
Me: "No. That kind of thing doesn't happen to 15 year olds."
Sam: "Well, there's a lot that doesn't happen to 15 year olds, but they happen to me."
Me: "True but you aren't going blind."
Sam: "Well, what if I do. This is happening more often and stays gone for longer. Will they have to take my eye out or part of my brain?"
Me: "Honey, I don't think it's anything too serious. I think it's just a bad headache or something."
Sam: "Well, I don't feel like I have a headache. Anyways, if they take my eye out, will you be able to buy me a glass eye so kids don't call me One Eye'd Sam?"

At this point, I am really not sure if I am going to break out into tears or laughter. Inside I am thinking this is the craziest conversation a mother could possibly have with her child! Who has to answer questions like this?? I get to have all the fun!!

Me: "Yes, I will buy you a glass eye if they take your eye out but they aren't going to take your eye out but if they did, think of all the fun you can have with a glass eye. You could hide it in your classroom somewhere then play I Spy and they have to find your eye!!! You could leave it in the teacher's Pepsi! You could roll it down the aisle to the girl you've been 'eyeing'!!!" (As you can see, I decided laughing and joking might be a better alternative to breaking down in a heap of tears on the kitchen floor with hair stuck to my salty face.)

Sam: Looking intently into my eyes said, "You are so weird."

Anyways, tomorrow he goes in for some testing on his eyes and probably his brain too. I really hope there is a simple solution to this strange problem. I really hope I can keep it together until then.

As for Shelbie, I just hope she is okay. I hope the lump in her neck, the low grade fever the petechiae and everything is just a fluke thing and will resolve itself. Cheers to crazy!

Saturday, November 24, 2012

I have this quote on my calendar from Paul Harvey that reads, "In times like these, it's nice to remember that there have always been times like these."

Well, I guess there is something to be said about the familiar. When the same old things happen over and over, predictability sets in and you maintain routine, even if it's a routine you don't love. On the other hand, change is good. Change from the same old monotony.

Today, I am feeling a little perplexed, a little tired and a little overwhelmed. It's been the longest week on record this year since my kids have been gone since Wednesday! I hate being alone, but I love being alone too. It's definitely a change from what I am use to.

Here's what hasn't changed...Shelbie's strange health symptoms the past three weeks or, perhaps things are changing, I guess it depends on how you look at it. She has had a low grade fever but no symptoms of illness really. Then, she has no fever but feels all the symptoms of having a fever with chills, then sweats, her skin hurts and pain in her joints. Two days ago, she complained of a lump in her neck. Today, she woke up with petichae and I am left wondering if this is ITP back or bigger problems brewing in her bone marrow that are leading us closer to Myelodysplasia...that is a horrid thought!

Two years ago, Shelbie's platelets crashed and Immune Thrombocytopenia Purpura was back with a vengeance. Strangely enough, Thanksgiving two years ago I took her to the ER with a platelet count of 1000. After months of trying different things to raise her platelets, we turned to chemotherapy as a last resort. The chemo worked wonders and it's been about 18 months since she finished that.

We knew that one of the side effects of the treatment was a destroyed immune system. Well, we got that and more. They said, "Don't worry, it will come back usually between 6 months and a year." I think after 18 months, it is coming back and it's all that and more...Welcome back Petichae! It's been a tough pill to swallow and so I have to wonder, is it really nice to remember that we have been through this before and we can get through it again? Do we really have it in us to go through another year of chemotherapy knowing how awful it is? This will be our third time!! There are no guarantees after this that her immune system will ever come back in fact, immunologists have told me that the second round of Rituxan usually does irreversible damage.

Of course, maybe I am mistaken. I guess that's what happens when you've been here before, you count your chickens before they hatch, put the cart before the horse, all in an attempt to prepare yourself for what feels like another round of Henry the Eighth song... second verse, same as the first! There is a chance that her IVIG infusions will hold the platelets for a couple of months but that's just a guess.

Sometimes I wonder what it's like to be normal; to live a life that is not filled with quite so much drama from day to day. This year has been ridiculous if you ask me. Every morning, I'm afraid to open my eyes for fear of what happens next...another job lost, another sick kid, another mysterious symptom. Everyday is a changing landscape of trouble yet, in times like these, I am reminded that there have always been times like these! Sigh...

Wednesday, November 21, 2012

I hate being in a fog and that is where I have been for the past couple of weeks, ever since making the decision that Spencer needed to be out of school. Making that decision had me all up in knots. Have you ever noticed that sometimes, it's the not making a decision that is worse than whatever the decision is. Does that make sense?

The past few days, I have thoroughly enjoyed a little rest thanks to denial. I have forgotten that starting Monday, it is my sole responsibility to get Spencer through the rest of High School. Bleh. Things have slowed down slightly or maybe it's that I have put a lot off knowing Thanksgiving was coming and I would be alone for the week while my kids went to their dad's so there will be plenty of time to catch up.

Then, I was awakened to reality when Shelbie continued to have an unexplained fever and then some days no fever and by no fever, I mean, it was weird. She had the chills and the shakes but that would turn into overheating and body aches and pain but no fever even though she had every symptom of having a fever. This has been going on for nearly 2 weeks.

Spencer has had some really rough days, today being the worst. He has been shaky, pale, clammy and nauseated. No other symptoms.

Sam, well he is on his second round of congestion and crappiness.

So,it's nice to know there is continuity to life. The circle of chronic illness continues and is alive and well and at our house...fog, denial and a healthy dose of reality....fog, denial and a healthy dose of reality....repeat!

Friday, November 16, 2012

As a follow up to my last post about wanting a temper tantrum...I had one. A really good one actually, later that same day. Just before dinner, Shelbie was complaining about being sick, Sam was complaining about all the homework he had and everyone was at the end of their frayed rope. I said, "Wouldn't it be great to have a temper tantrum right now? We could all lay on the floor and kick and scream and roll around like we are 5 years old!" So, we did. It ended with us laughing out loud at our silliness. Oh well, sometimes a little kicking and screaming is good for the soul.

Sometimes, it is the indecision in a decision that is worse than the actual situation. Does that make sense? I finally called the Principal over this whole school issue with Spencer, and asked him if he could help me come to some conclusions about what to do. He invited Spencer's school counselor as well and we had a productive meeting. I laid out all the facts for him and he reported that Spencer had missed over a third of the trimester because of illness.

We talked about the Home-bound program, changing schools to the Alternative High School where they have different hours and work at a different pace and then the option of Home-schooling. Home bound is really for a child who has a predictable health situation or injury; like, they get Mono and know they will feel lousy for a month or two. It's not for a kid like Spencer who has 2 or 3 good days and then a few bad days. It's unpredictable. Not only that, they have to miss 10 consecutive days before they can be placed on Home-bound. That hasn't happened because I keep forcing him to go to school even when he isn't doing well. The Principal even suggested that I just don't send him to school for the next 10 days and then he will qualify.

In the end, we decided that the best thing to do is withdraw him from school. It was a really hard decision but having the support of those two great men, Mr. Hampton and Mr. Hawkins, helped me feel a little better as I left the school. They will help me get the curriculum to teach him at home. The downside, well, there are lots of downsides but it is not free. $50 for each class he has to take. We will concentrate on one class at a time and in theory, he will finish up the same time as his graduating class and walk with them for graduation.

Let's be honest, I am not a teacher. I am definitely not a High School teacher. I almost started crying in the Principal's office at the thought of teaching him math. I can not wrap my head around math and I tried teaching him math last year and ended up having to pay for a tutor. After I admitted my stupidity with numbers, they said, "Don't worry, we will put together something like a consumer math program that he will be able to manage easier than trig." Thank goodness!! There is a God!

So, as of Monday, welcome to Run A Muck Academy...that's what I'm calling our new school here at home. I have no idea how this is going to work. I home-schooled Shelbie through Junior High and the last two semesters of her Senior Year she was on Home-bound but this feels a little more overwhelming. Maybe because I know what to expect! When I home-schooled Shelbie, I was working 50 hours a week and she came to work with me and sat at my desk and did her work while I did mine. It was interesting.

I guess this weekend, I will have to start making 'Hall Passes' and Reading Charts and hang the alphabet up around the front room and whatever else teachers do...Looking forward to the course on Botany, me and my green thumb just can't wait!!! (Note the hint of sarcasm)

Wednesday, November 14, 2012

Wouldn't you love to be a little kid again just for the mere fact that you can throw yourself on the ground and flail around, kick your feet, whine and cry and then your mom comes and picks you up and puts you in time out? Kids have no idea how lucky they are!

I would give anything to have a full blown temper tantrum complete with kicking and screaming but that might seem a little weird at my age to act like that and it would most certainly freak my kids out. It might even get me a trip to the mental hospital which really, now that I think about it, might not be that bad...ya know, maybe not. A nice white jacket with extra long sleeves and silver buckles...it's coming back in style.

There comes a point in the life of chronic illness that it just becomes old and frustrating. School is driving me crazy! Second to that are ignorant people.

First let's talk about school. It's really hard when the kids miss so many days, to keep everyone on task and caught up, especially when teachers kind of drag their feet too. It's hard some days to even feel the importance of an education when it's another day of sickness and discouragement. It's extremely challenging to keep the kids positive about school when their health is crumbling before their eyes. They feel overwhelmed because they never get ahead. It's hard for me to keep a balance between towing the line and feeling sorry for them. I have my critics but I do the best I can.

This trimester for Spencer has been horrible!! The missed days out number the good days. He has really struggled to get caught up and to keep a good attitude about it all. I'm afraid that I am so tired with my own little struggles that I haven't pushed him like maybe I should have. His GPA is .75...sad. So, now I don't know what to do. The biggest part of me wants to move him to home bound status but he's had a couple of really good weeks so what if I do that, and he has a couple of really good months...then I feel like a bad mother because he will be sitting at home, perfectly capable of going to school. I can send him to the alternative school where they collect 'packets' and work at home at their own pace. We've tried this before but Spencer has lacked initiative to maintain an independent study schedule and I don't have the energy to ride him about it. Finally, I say just drop out and take the GED until you pass it and call it day! There is no easy answer and I am lost. I just want someone to tell me what to do, I can't make one more decision. Spencer is to the point where doesn't want to go to school anymore period! That will only result in regrets down the road.

It's really easy for people to be critical about the way I have raised my kids. It's starting to really get to me though. I've pretty much been beaten down this week with people telling me I have 'spoiled' my kids, coddled them, not allowed them to experience any difficulties or challenges in life and when they are grown ups, they won't know how to deal with hardships and my favorite, I have taught them to be quitters and take no responsibility in life. Those are some harsh words and they haven't settled too well my somewhat fragile self esteem lately. In fact, I'm just going to say it...it downright sucks!

I want to tell them they have no idea what this feels like. Maybe they are right. Maybe, I really have screwed my kids up and all I have are three irresponsible kids.

I wish I could tell them how it feels but when I try to find the words to express how tired, frustrated and lost I feel in this battle of chronic illness, I can't even find the words to say. I am speechless and it's probably not worth my energy to defend myself as a parent. It's not like anyone ever prepared me for extenuating circumstances like this.

So, until I can find my voice, and words to come close to describing how I feel, I will just have my little temper tantrum in my head, all the while wishing I was 5 again.

Tuesday, November 13, 2012

Here are a few more wish pics! I posted them on Facebook but want to have them here too.

Spencer and Jimmy Fallon! Okay, obviously not the real Jimmy but he gave the kids a really nice gift and Spencer got an autographed photo! It was amazing!

My boys and Howard made it onto the Times Square Jumbo Screen! And Microsoft hooked them up with some sweet gifts!

This was a little extra we did- skating at Rockefeller Center. I mean, you can't go to New York and not skate at the Rock!

The famous LOVE Sculpture

This was Monday night, as the Hurricane rolled in. The hotel was wonderful and they let us borrow a scrabble game they had to pass the hours we were stuck in our room. We were so blessed to have never lost power while all around us, they were not so lucky!

Finally, we needed to mark this exceptional trip with a Muppet! We headed to FAO Shwartz on our last night and when they finally opened back up after the Hurricane days, and made our very own Muppet. We got to choose all the parts and pieces! Howard made one too! We named ours Sandy Seemore. Sandy, after Hurricane Sandy and Seemore because we got to see more of NYC!!

Everytime I look at these pictures, I smile. It felt so good to see the kids without a worry in the world and the hurricane, well, that was just another adventure!

Sunday, November 11, 2012

Isn't there a rule somewhere in some unnamed book that states that 'Mother's, especially single mothers, don't get sick'? I'm sure there is. Unfortunately for me, that rule has been broken this weekend.

I started feeling sick on Friday night. The basic cold/flu symptoms. I took an obscene amount of vitamin C in hopes that I could remain a functioning human being on Saturday. I had an office and a house to clean, laundry to complete and work at the temple.

Saturday morning came and I could barely roll out of bed despite sleeping for nine hours which is some sort of record for me. I don't get opportunities like that to sleep very often. I took another obscene amount of vitamin C with a large dose of ibuprofen as a chaser and did everything I needed to do. By Saturday night, I crashed. I thought, surely I would feel better today. With colds, the first two days are usually the worse but after that, it's more annoying than anything. Not my luck.

I feel worse today! Ugh...I hate being sick. I feel like I have the mumps. My neck is so sore, not to mention I am drowning in congestion. Nice right? Being sick is such a waste of time and so unproductive.

Saturday night, I brewed me up a big pot of Antioxidant soup. It sounds disgusting but it's really pretty good. I was trying to cram as many vitamin filled vegetables as I could into one serving. I started with a base of crushed tomatoes. I added broccoli, cauliflower, mushrooms, cabbage, carrots, celery, red peppers and red onions. I seasoned with tons of garlic, chili powder and black pepper. I simmered that for an hour or two and have been noshing on that. It feels good on my sore throat and it's my subliminal way of taking care of myself which is another thing that rarely happens.

Life has been tough the past few months, I guess my body is saying it just needs a break. If I was nice, I would give it a break but I just can't do that. If I give in to this virus, then I won't be able to work this week and if I don't work this week, we don't eat anything other than Antioxidant soup and believe me now, here my children screaming later, if I make them eat that all week! They wouldn't even touch it with a 10 foot spoon! They can't even stand the smell of it. They are 'allergic' to vegetables! So, here's to breaking up with Viruses...I'm done!

Thursday, November 8, 2012

We made it home from Boise today. For some reason, this was a harder trip than I had been planning on. It's not that anything bad or disappointing happened really, I think I am just so run down I didn't have the stamina I usually have for these events. We couldn't even leave for Boise until after 8pm on Tuesday so we didn't get to our hotel until 1:00 am and then had to be up and at it by 6:00am so we could get back over to St. Lukes. Five hours of sleep is not great but it would have been nice to get 5 hours. Sadly, the adjoining room was having some big party and sleeping was not really on their minds so that pretty much sealed the deal that it wasn't going to happen for us either.

No sleep and a day full of information and testing makes for a long day! Last night, they did a sleep study on Spencer to try and figure out why he gasps for air and chokes for no apparent reason when he lays down and all through the night. They think that it's related to his mitochondrial problems. The Pulmonologist said that it is a common complaint in his Muscular Dystrophy patients. I kept thinking in my head, 'Thanks for sharing that but he doesn't have Muscular Dystrophy' until I realized that both diseases have to do with weakened and diseased muscles so, I guess I can see the similarities. I still didn't like to hear him comparing Spencer to his MD patients.

I really liked this doctor which is a lucky for us because he now joins our team of specialists. He fits in well with our other doctors in Boise. While we wait for results on all the testing we did, Spencer will do a little more here at home. We are trying to figure out what to do with Spencer's asthma. It has never been out of control to the point that he has to visit the ER but he has this continual, nagging cough that never goes away. Dr. Goltry, the Pulmonologist, has Spencer doing some work with the peak flow meter over the next couple of months and using a spacer with his inhalers in order to get the medicine deeper into his lungs. We'll see if that helps.

For the sleep study part, they wouldn't let me stay with Spencer in his hospital room because they were afraid if I tossed and turned in the recliner, I would disturb his sleep and their ability to get an accurate reading. They offered me another room right beside Spencers. I wasn't really keen on spending the night in a hospital room in a hospital bed and opted to find a hotel room but the nurse insisted, so I crashed there. The weird thing is, the room had all these cameras in the ceiling. I didn't really think anything of it until I got up in the night and walked the halls a bit and saw my empty bed on the monitors in the nurse's station!! Creepy! They were watching me sleep!

I had a hard time sleeping after that which probably made me look ridiculous because I was tossing a turning and not sleeping at all. Finally at 5:30 am, I sat in a chair and wrote in my journal. When Spencer was discharged that morning, they gave us food vouchers for the cafeteria and we were off. I so wanted to be home and I never want to pack another suitcase the rest of this year!! I really like St. Lukes, they are good to us and so kind to Spencer. Now, we wait...and wait and hope for good results!

Sunday, November 4, 2012

Well, I called it! I knew this trip would be too hard on at least one of my kids and I was right. Shelbie hasn't gotten out of bed since we got home Friday night. She is one tired girl and now one sick girl. She was up through the night with stomach problems. I loaded her up with Zofran and prayed she wouldn't spend all night vomiting, I'm too tired to deal with that.

She really struggled throughout the trip but she tried hard to keep going. We walked about 8 miles a day. We walked everywhere! We could have taken a subway up until Sunday when everything shut down but when you take a subway, you miss really cool things so we walked. We started walking at 8 in the morning and got back to our hotel at 10 or 11 at night.

Shelbie has tethered nerves in her legs so she is often in pain because the nerves don't stretch as far as they should. That's why wearing high heels is more comfortable for her than flip flops or tennis shoes. She started out trying to wear a mid heel but that gave her blisters. We bought her some casual shoes with a bit of a heel and they worked for a day but by Sunday, she was miserable. The weather was getting miserable with the impending hurricane and it was raining, cold and windy. Half way up our Wall street walk, I saw a TJ Max in the basement of the Trump Building. It was only early afternoon but they were about to shut down so their workers could get home before the transportation was cut off. I ran in there to find a better shoe for Shelbie. All I could find were some fluffy, fur lined, leather slippers. They had a hard sole so I grabbed them. She was able to get through the rest of the day and wore them the remainder of the trip. Poor girl. Now she is paying for overworking her body. She was not happy with me that we did so much walking. Note to self- She will need a wheelchair if we ever go away again.

Sam did quite well, he has a lot of stamina that kid. When we got to Salt Lake though, he lost his vision again! That is really starting to freak me out. I have a hard time wrapping my head around the fact that it could just be ocular migraines. The word 'migraine' conjures up all sorts of bad pain but he is never in pain so it doesn't make sense. I know there are kids with mitochondrial disease who have symptoms of vision loss like Sam but have eventually become completely blind! Ugh, I do not want that to be our cross to bear. I gotta figure something out, I can't live with this unknown factor.

Spencer hung in there. The last thing he wanted was for his GI problems to ruin the trip. He still had problems but he was really careful not to say a word about them because he knew I would make him rest at the hotel. A couple of times, it was obvious that he wasn't doing well. He disappeared at the zoo for a while and hung out in the bathroom and after a big steak dinner the last night, he didn't do well once we were back. The big challenges come this week for Spencer. In the stacked up piles of mail, there were three letters from the school saying Spencer is failing all classes do to lack of effort!!!

I was so angry! Do teachers not have any idea what is going on with him? I have told them all over and over, I don't get why they keep hassling us. It's only going to get worse since Spencer is headed to the hospital in Boise this Tuesday. More missed school!

Too bad every day can't be a Make A Wish day! There is so much to do this week...

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"For a small moment have I forsaken thee, but with great mercies will I gather thee...I hid my face from thee for a moment, but with everlasting kindness will I have mercy on thee, saith the Lord thy Redeemer...For the mountains will depart and the hills shall be removed, but my kindness shall not depart from thee, neither shall the covenant of my peace be removed, saith the Lord that hath mercy on thee.

Oh thou afflicted, tossed with tempest, and not comforted! Behold, I will lay thy stones with fair colors, and lay thy foundations with sapphires. And I will make thy windows of agates and thy gates of carbuncles, and all thy borders of pleasant stones...great shall be the peace of thy children. Thou shalt be far from oppression for thou shalt not fear, and from terror for it shall not come near thee." 3 Nephi 22:7-14